It has been a busy week filled mostly by appts for various things but today's craziness included an "oops" MRI which was really meant to be a CT except messages got mixed up between my neurosurgeons staff. No fan of MRIs here and was even longer than c-spine MRIs normally are as they added a few extra images since they already where doing it to look at the shunt catheter tip and something else. So the CT scan which is what was supposed to be done (for Tues surgery so she can use the stealth (endoscope) machine to guide the catheter in at a better angle) was then scheduled for later this afternoon after my Neuro-Opthalm appt but then that to ran over so now the scan is set for Fri. This of course means another trip back to Madison, no fun! (but will do something if feeling 1/2 way decent to make it an ok trip) I saw Dr.Bragg's NP, Sue after the MRI and she re-programmed the VP shunt back to it's original setting with a bit of difficulty but non-the-less we got it so TPL valve is back at .5, the lowest setting.
The Neuro-Opthalmology (Eye) Appt went well; the visual field studies where repeated which I must say are incredibly yuck (bc of the way your sitting and your neck is at an odd angle, a hard feat with the hardware in my upper neck) but went fine and no progression and possible improvement so i'll take that. I dont have to go back to her for a year if no changes w any of the shunt surgeries or issues! I see my regular eye doc the beginning of April to get stronger lenses for my glasses as the shunts have done a wonder on that but I knew this already and had already scheduled this appt.
I dont talk about this alot since I do Physical Therapy almost weekly but I had PT yesterday and he was impressed with how much we've gained in just the last 2 weeks some of which he thinks has to do w the shunts regardless of their not consistently draining enough now as I wasnt retaining as much fluid all over. He also commented how he thought I was standing taller and less of the forward-caveman posture which is something I am always struggling to improve!!
Running for Rare diseases blog post from my running partner (she is running on my behalf to raise awareness of MPS):
And last but not least I meant to write about this last week as I think it has implications for MPS pts but when Dr.Bagg was talking about the possible future skull expansion (done with plastic surgery) at last Thurs's appt she commented how abnormally thickened my skull is and she feels this is atleast partially due to compensated but un-treated Hydrocephalus as a kid. This headaches, nausea and vomiting, etc that I experienced often as a kid and I think starting around 1st grade when I was sick the most often but which imaging showed no problems when that was done at one point (first grade I believe, wayyyy before the MPS dx) where likely secondary to the compensated, un-treated Hydrocephalus. She said this leads to skull expansion or thickening of the skull bone which is if I understood her correctly (not sure I am remembering it all right) then affects how well shunts work and the ability of ventricles to expand properly. Very interesting and all the more reason why kids AND adults NEED to be diagnosied EARLIER w MPS I! And more doctors should really study the brains of MPS I pts, the headache issues and how common is compensated increased intracranial pressure in our population and kids?
I recently installed a app which tells me where people are from and I dont know if someone will really comment but I get a visitor from Platteville 1/2 a dozen times it says since instaling this, I am curious who is this?? I wonder if whoever this is, is actually from another nearby city as I sign on as says I am from BD but I live about 10miles away, in another city. And for others feel free to sign up as a 'follower' help me raise my #'s! :)